Live Wisely

How an Ectodermal Dysplasia Diagnosis and Advocacy Expanded Our Family

By: Becky Abbott, Director, Treatment and Research Advocacy

When my first son Aidan was born, his pediatrician noted that he had leathery skin and dark circles under his eyes. The doctor assured us that he wasn’t worried, and neither were we. I thought Aidan’s symptoms were merely common family traits that were passed down.

During his first few years, Aidan had severe allergies, continual respiratory illnesses, extremely sensitive skin, and would spike high fevers with ear infections and everyday colds and viruses. Antibiotic prescriptions became routine, as did moisturizer applications several times a day to protect his skin.

When he was two, we noticed that most of his teeth weren’t coming in. We received a referral from our dentist to visit Children’s Wisconsin Dental. It was during our first appointment with them that we first heard the term ‘ectodermal dysplasia‘.

Our next step was a referral for another appointment with Children’s Wisconsin Genetics Center to see a genetic counselor and geneticist to confirm if Aidan did, in fact, have an ectodermal dysplasia. We were so close to an official diagnosis after years of visits to specialists, but our insurance wouldn’t cover the genetic testing. It wasn’t until 2017, when Aidan was twelve that we were able to participate in a study at the National Institutes of Health (NIH) that confirmed that Aidan had X-linked Hypohidrotic Ectodermal Dysplasias (XLHED).

From the moment I had first heard the term ‘ectodermal dysplasia’, I started doing research. One of the first resources we found was the National Foundation for Ectodermal Dysplasias (NFED).  The NFED became my go-to resource for my persistent questions, and I quickly started to rely on them for up-to-date information and support. Our family began to connect with other families through events and online support groups, and we learned more about ectodermal dysplasia from them.

The NFED staff and families provided us with suggestions on many topics, one being what type of clothing and sunscreen would help protect Aidan and keep him cool. One of the symptoms of many of the 100+ different types of ectodermal dysplasia is a rare skin condition, so it’s important to always keep the skin healthy to avoid secondary health issues. Discovering UPF 50+ sun protective clothing has been great for our community because it shields UV rays and helps keep the skin cool. Exactly what we needed.

Soon after we learned Aidan may have ectodermal dysplasia, we were being denied insurance coverage for medically necessary treatments to treat and repair his oral and dental anomalies. Since Aidan was born missing teeth, he has needed a denture since around the age of five. After repeated insurance denials and setbacks, our family decided we wanted to raise awareness about the issues we were experiencing. 

In February 2016, we traveled to Washington, D.C. for the first time to share our story. We wanted to educate our legislators and Member of Congress about ectodermal dysplasia, congenital anomalies, and the insurance coverage issues our family, along with many others, were facing. None of the legislators we met with had ever heard of ectodermal dysplasia.

Eventually, other families and patient advocates joined us to form a grassroots advocacy campaign and family-driven advocacy committee led by the NFED. After spending time educating our Senator and hearing Aidan’s story, she was inspired to write federal legislation.

Our advocacy committee continued to grow, and we garnered more and more bipartisan support for a bill Aidan had the privilege of naming: Ensuring Lasting Smiles Act (ELSA).  With this bill we’re working to ensure that everyone born with ectodermal dysplasia and other congenital anomalies will have access to health-insurance-covered medically necessary procedures that are needed to maintain health and overall function, and confident smiles.

Each legislator that signs on is a small victory, and we continue to celebrate each one. What started out as a small group of advocates led by a small patient-advocacy group, quickly developed into hundreds of advocates. We have now built a group of over 60 organizations that support ELSA!

By the end of 2021, in the middle of the 117th Congress, our bill was one of the most popular bills in the U.S. House of Representatives, which was a big win for all of us!

We continue to fight to get ELSA passed through U.S. Congress each year at the NFED’s Advocacy Day on Capitol Hill. If passed, this federal legislation would require private insurance to cover medically necessary services resulting from congenital anomalies.

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Skin Diaries

‘Shadow Jumper’ with Rare Disorder

By: Cayla Marie

At age 13, I was diagnosed with Erythropoietic Protoporphyria (EPP). Ever heard of it? No? Don’t worry, you’re not alone. I have yet to stumble upon someone who knows this invisible disorder. In fact, it took my mother 13 years of dedicated searching to find a doctor who understood what was happening.

According to the American Porphyria Foundation, Erythropoietic Protoporphyria (EPP) is a rare inherited metabolic disorder characterized by a deficiency of the enzyme ferrochelatase (FECH). Due to abnormally low levels of this enzyme, excessive amounts of protoporphyrin accumulate in the bone marrow, blood plasma, and red blood cells. The major symptom of this disorder is hypersensitivity of the skin to sunlight and some types of artificial light, such as fluorescent lights (photosensitivity). After exposure to light, the skin may become itchy and painful. Affected individuals may also experience a burning sensation on their skin. The hands, arms, and face are the most affected areas. Some people with Erythropoietic Protoporphyria may also have complications related to liver and gallbladder function.

Imagine going to the beach as a kid and all you wanted to do was scream and cry because it hurt so much to be outside that you couldn’t stand it. Tears welled up in your eyes as you fought to hide your hands in the sand because it was the only relief, just to find that the scratch of the sand on your skin intensified the pain. As a result, you shook the sand off your hands and ran to the water, only to find the impact of the air on your skin after submerging in the cool water was unbearable. The pain onset rapidly and was excruciating, but no one else could see it but you – it was invisible.

Do you look crazy? Probably. It doesn’t surprise me that some doctors would think of a mental health issue and recommend therapy. To make it even crazier, my sister had the same feelings! At least someone didn’t think I was crazy.

My mom was determined to understand what was wrong. We went to every doctor under the sun (no pun intended!) without any luck until 2003, when we finally stumbled upon a dermatologist who thought our case was intriguing. After countless appointments, we were diagnosed.

Once we finally figured out what it was, we were able to take a deep breath and think about life a little differently. I became a ‘shadow jumper,’ running from shadow to shadow to avoid the painful reaction to the sun. Staying inside just seemed easier. I remember trying out for the soccer team in middle school and just bawling my eyes out in the locker room because I couldn’t stay out long enough to make the team.

I was determined to live a normal life in high school. I played soccer, I was in band, and I ran track. I covered myself from head to toe to make it happen. I lived through constant comments and misunderstandings (not easy for a teenage girl), hiding under trees when I could, and only stripped down to my uniform strictly for game-time. What the others didn’t see was me running my hands along the cool metal bar under the seat of the desk during class the next day, desperate for something to calm down the intensity of the pain on my hands. They didn’t see me struggle to shower after practice while even cool water felt like 117 degrees on my face.

It wasn’t until college that I finally started finding my way. I discovered the value of forming relationships with those who appreciate you as an individual and don’t care about how you look. I even found the BEST sport on the face of the planet for those who are sun-sensitive – caving! There is nothing more fun than crawling around in the mud and exploring the dark places of the world with great friends. I found that outdoor enthusiasts were the most gentle, caring people in the world. While it may seem counterintuitive based on my natural resistance to the sun, all I wanted to do was be outside with my new friends.

Hats, masks, gloves, long sleeves, pants, and umbrellas become a part of everyday life. I finally understood that it didn’t matter what I looked like (though I was excited to find the skin-colored gloves). I could, and should, enjoy myself outside just like everyone else (with the right coverage, of course) and that’s all I really wanted to do. I found my way, embraced my disorder, and confidently became the vampire I am today!

After finishing my undergraduate degree at Penn State, I moved to the Pacific Northwest – the rainiest, cloudiest area of the country and I started to go outside more often. I married my incredible husband who will gladly be my shade in every situation. He is also totally fine getting caught in the rain with me, which is great!

After 30 years of making my way through the shadows, I caught wind of some medical research on my disorder. Scientists have come up with an implant called Scenesse that reduces the painful impact of sun exposure for those with EPP.  I was approved in August for my first dose, and I can’t even describe the emotions I experienced when I received that email.  For the first time in my life, I went outside to water my garden without having to put on my ‘porphyria suit’. I drove to the grocery store and walked from my car to the door without putting on several layers of additional clothing to go outside. It was incredible! The convenience of it all still baffles me! While I only seem to get about 15 minutes of outdoor time before the pain kicks in, I am filled with joy and gratitude for those minutes that many take for granted. I will cherish each of those convenient moments. Medical innovations are truly miracles and I appreciate those who investigated the life-changing impact for someone who can’t go in the sun.

Regardless of my porphyria, the wilderness is where I feel most at home (kind of ironic). In April of 2022, I will be setting out on a trek to hike the Pacific Crest Trail – a 2,650-mile journey from Mexico to Canada. The thru-hike is notoriously challenging both physically and mentally, but I am ready for the adventure! It will be interesting to see how long I can make it in the daylight, or if I switch to night hiking. Whether I make it 100 miles, 1,000 miles, or all the way to Canada, I will be proud of the progress I’ve made getting outdoors as an individual with Erythropoietic Protoporphyria (EPP).

Follow along @cdank13 Instagram to learn more about the experiences of a porphyria warrior.

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Skin Diaries

Pro Golfer Inspired by Grandfather’s Melanoma Diagnosis

By: Kaitlin Milligan

Growing up, I always wanted to be outside whether it was sports-related or even just cooking out with the family. Every chance I got; I was out under the sun. More often than not, you could find me at the course perfecting my golf game.

Golf has always been a huge part of my life. I’ve been playing ever since I could walk and competitively since I was seven. Every weekend I had tournaments and every day after school I had practices. It wasn’t until I went to college at the University of Oklahoma that I started to realize just how much time I spent outside, especially with golf. 

Around the time I left home for college in 2018, my grandfather was diagnosed with melanoma. The doctor found a spot on his nose and explained that it had to be removed right away. My grandfather was always the person that never had anything wrong with them, which is why his diagnosis shocked my family. He was beyond tough, fought hard, and in the end, he beat cancer. His journey truly showed me how important it was to take care of yourself.

My entire family is now consciously aware of the way our skin changes and how fragile we all are when it comes to the sun. We’re constantly looking for new spots and are scheduling check-ups with our dermatologist. With this constant vigilance, my grandfather recently had more bumps on his nose checked out and found that they were pre-cancerous. Since he identified these spots early on, all he had to do was get them removed. He continues to be an exemplary model of how to take care of your skin, especially on the golf course. I don’t think I ever saw him wear a hat or put sunscreen on before cancer but now he is religious about it.

It’s because of him, I started wearing sun-protective long sleeves on the course, applying sunscreen to any skin I have exposed, and I’m working on trying to wear sunglasses to protect my eyes (that one is a work in progress). In 2021, I began my professional golfing career, which meant that I could finally pick the clothes that I wanted to wear. I was explaining to a family friend what I was looking for in a clothing brand—my primary need being sun protection—and he introduced me to Coolibar.

It made me very happy knowing I was protected in the sun while also feeling stylish and sporty on the golf course. I can now practice as long as I want in the Arizona sun and be certain I am covered. I think there is a general belief that skin cancer is treatable, and we often downplay the effects and the need for protection. That’s why I want to promote sun safety to other golfers, especially the younger generations, and educate them on why it is extremely important to protect their skin.

My grandfather’s experience helped me gain a desire to want to help others become more proactive with their sun-safety, in hopes that they will never have to hear the words, “you have cancer”, like my grandfather did.

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Inside Coolibar

Top 10 Favorite Holiday Gifts by the Coolibar Team

The Holiday season is here, and you know what that means… trying to find the perfect gift. To get inspired for what you may want to get your loved ones, we caught up with some of the Team on what THEIR favorite products are here at Coolibar!

Anne – Chief Brand Officer

Favorite Activities: Weekend mornings sitting on the deck reading, Hiking, Nordic Skiing

Top Product Choice: Wyatt Bucket Hat

My go-to gift is hats because everyone needs a good one for sun protection and, in my opinion, you can never have too many! I like to gift bucket hats because they are easy to wear with anything and flatter most face shapes. Hats are generally easy to guess the right size too. My current favorite is the Wyatt bucket hat. It’s stylish without being trendy, packable and super lightweight. I personally have it in multiple prints. BTW, the Wyatt is technically a men’s hat, but there are quite a few of us women at Coolibar that don’t discriminate when it comes to hats. If the hat fits, we want it!

Kristen – Director of Brand

Favorite Activities: Traveling, Getting outside, enjoying the lakes and hanging with friends!

Top Product Choice: Maho Weekend Pants

I seriously live in these pants. They are an easy breezy throw on and I love the fit and, of course, the sun protection. They are perfect for chilling on the sofa or getting out for a walk. Having a dog that loves lake walks, it is great knowing that I am not only comfortable but protected by the sun, when I go out these. I know own several pairs and am gifting a pair to my sister for the holidays!

Monica – Ecommerce Manager

Favorite Activities: Gardening, Curating Cats, Extreme House-planting

Top Product Choice: Women’s Daybreak Swing Top

For me, the weekends are when I get stuff done. I don’t like to waste time thinking about what I am going to wear when I wake up in the morning – that’s what Monday through Friday is for. I have found that no matter what I end up doing, if I grab one of my Daybreak Swing Tops, I am set for the day. All I need to do is decide which color to wear (I have 5 … and 1 more pending.) I am on the taller side and like my tops more tunic-like. But the problem with some tunics is that they are boxy or shapeless and that does me no favors. This top being fitted at the chest makes me feel somewhat tailored (for a t-shirt) but it is forgiving in all the right places. It basically checks all my boxes and that is not easy to do.

Hayden – Social Media Manager

Favorite Activities: Golfing, Being on the lake with my friends, Traveling

Top Product Choice: Agility Performance Pullover

It seems like I constantly have plans 24/7 and honestly, sun protection sometimes becomes an afterthought. My solution? I legitimately own 4 of our Agility Performance Pullovers in different colors and will wear it for any and every occasion! From heading out to the course to meeting some friends at a brewery, you will find me with this top!

Leslie – Manager, Organizational Effectiveness

Favorite Activities: Fishing (lakes + deep sea), cycling, downhill skiing, and traveling.

Top Product Choice: Women’s Paros Sailing Tee + Men’s Andros Fishing Tee

My husband and I LOVE to fish in the MN summers and when winter comes along, we are off to somewhere warm to do some more fishing. We don’t leave the house without our Paros and Andros tee’s so we can enjoy the sun while on the boat for 8-12 hours at a time. These are our “go-to” shirts because the technical fabrics keep us cool and protect us from harmful UV rays, at the same time.

Mariah- Merchandising Specialist

Favorite Activities: Going to the lake, Exploring with my dogs, Anything outside

Top Product Choice: Tatum Convertible Explorer Hat

I LOVE being able to spend time outside, especially if my dogs are around! Which normally means I am going for long walks or spending hours by the lake watching them play! My Tatum Convertible Explorer Hat it is so easy to grab and go when running out of the house, plus it is convertible so I can adjust the amount of coverage I need throughout the day or depending on activity!

Denzell – Medical Professional Consultant

Favorite Activities: Running, building things, reading, working out and hanging with friends and family

Top Product: Erodym Long Sleeve Golf Polo

One of my favorite shirts in my closet is my Coolibar Erodym polo shirt. Whether I’m at work, headed to the course or hanging with friends, this is my go-to “no brainer” shirt. Because of its elegance and functionality, I don’t have to worry about fit, compromising comfort or performance, and I get to look good and feel protected.

Lacey – Lead, Merchant

Favorite Activities: Golfing, Traveling, Rock Climbing, Biking, Hiking

Top Product Choice: Motio Joggers

Sun protection is a big priority for me because of skin sensitives and genetic history. I find it difficult to remember sun protection for my legs though. So, my solution is an amazing sun protection bottom that you can live in! The Motio joggers are lightweight, stretchy, and have excellent moisture wicking properties. I use these pants outdoor running, long days hiking and climbing, biking around the city, running errands on the weekend, travelling, and just lounging around. I wear them everywhere!

Kat – Business Unit Lead (Hats, Ultimate Coverage)

Favorite Activities: Anything outdoors and adventurous!

Top Product Choice: Lenny Sport Cap

Living in the Midwest, it is very important to me to spend time outside when the weather is nice! The Lenny hat’s oversized brim protects my face if I am out on the lake, hiking, or watching my nieces and nephews’ games. It comes in multiple colorways so it always pairs well with any outfit and is adjustable for added comfort.

Kelsey – Social Media Specialist

Favorite Activities: Golfing, Kayaking, and Traveling

Top Product Choice: Devi Long Sleeve T-Shirt

Whenever the weather is nice, I always try to take advantage of it by being outside. I never have trouble remembering sun-protection but reapplying is where I struggle… Our Devi Long Sleeve T-shirt solves this problem of mine with its built-in sun protection that keeps me covered all day long. 10/10 recommend this to all my friends and family!

Looking for more ideas? Check out our Holiday Gift Guide.
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Skin Diaries

74-Year-Old Instagram Influencer Embraces Sun Safety and Aging

My name is Candace, but most know me as Leslie B from my Instagram channel Style in Your 70’s with Leslie B. I started my channel to help women embrace aging with grace and optimism. After all, ‘aging is changing’, and that’s a good thing. When I started posting, I was 72 and had been a model, then a wife, mother, grandmother, and I was ready to share with everyone the joy and enthusiasm I was feeling for my evolution. I wanted to help everyone feel vibrant at any age.

I share a lot of health and wellness tips, but I focus a lot on protecting your skin. I come from a generation that had no idea that the sun was bad for you. It never occurred to anyone back in the 50s and 60s that we needed to protect ourselves from the sun. Not only did we spread baby oil all over our skin to intensify the sun’s effects, we bought Sun Lamps to use inside when we could not be in the sun! Like many of the women I grew up with, I unknowingly made myself more susceptible to skin damage and cancer. I had my first brush with skin cancer at age 48.

I had a very itchy spot on my leg and just kept assuming it would go away. Thanks to the spread of information on skin cancers at the time, I was well enough informed to know that this needed to be looked at. I was told that it was a Squamous Cell Carcinoma and had it removed by a dermatologist.

This experience inspired me to start being more sun-safe. I first started to gradually incorporate sunscreen into my makeup. But still, for many years I did not use sunscreen all over my body.  For a long, while I worked as a model, the fashion and advertising industry continued to promote models and actresses with bronzed bodies. We weren’t hearing enough about how we were damaging our skin.

Then, two years ago when I was 72, I again noticed a suspicious spot on my other leg. Again, the biopsy came back Squamous Cell but this time it was more serious and needed a more extensive surgery, so I chose to go to a MOH’s trained surgeon where they were able to take as little skin as possible and test at the time of the surgery to make sure there were clear margins. It required about 26 stitches and a long healing process. Not even a month later I noticed another suspicious spot a couple of inches from the first one. Another biopsy revealed I had yet another Squamous Cell. While the first surgery was still healing, I went back to have surgery again.

At this point, sun protection became a much more significant part of my life—and my family’s.  Wearing sunscreen and sun protective clothing from Coolibar has become part of our everyday lives. I am very vigilant about checking my body regularly for other skin cancers, and I visit my dermatologist every four months for a full body check. I consider myself very lucky that so far, my cancers were all easily treated. Having had these cancers I know that there is a high likelihood that there may be more in my future. Hopefully, by being well informed, using SPF products and sun protective clothing that is guaranteed UPF 50, I can minimize my chances of developing more skin cancers in the future. By learning to choose only high-quality products like Coolibar and by becoming educated that not all UPF is created equal, I can help spread this knowledge to so many!

The one thing I want my followers to take away from my posts and my story are that aging isn’t a negative thing. There is so much we can do to care for our minds and our bodies that help us age and change gracefully. Protecting our skin is one of them. So go out there! Break all the rules and myths you’ve heard about the downside to aging. Put on your sun protection and have fun!

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Skin Diaries

Miggy’s Gift: A Legacy Left Behind

My son Stephen Daniel Chavez was a fun and loving young man with a kind heart and an infectious laugh. He was really creative and became interested in technology and video games. He graduated with a degree in Video Game Development and Design and started his career in an industry he loved.

Stephen blended his passion for video gaming with his intrinsic instinct to help others. He organized a video game tournament in Miami called Florida Lan (Flan). Gamers flew from across the country to attend the two-day event. All the money raised was donated to an organization that provides video consoles and games to pediatric hospitals and homeless shelters. He was thriving and finding ways to give back.

In the summer of 2015, Stephen was 27 years old and was sitting on top of the world. He had a job he loved. He bought himself the car of his dreams—a Mustang. And he traveled whenever possible to meet up with friends from the gaming community. Then, Stephen noticed a mole on his back. He went to the dermatologist and a biopsy confirmed it was Melanoma. They were able to remove the melanoma, and Stephen began his quarterly visits to the doctor’s office. For the next two years, doctors watched his health closely and although additional moles were biopsied, none tested positive for cancer.

By the summer of 2017, Stephen’s physician was feeling confident about his prognosis and recommended changing follow-up visits to every six months. Two weeks later, Stephen’s father and I took him to the ER thinking he had a stomach virus. We discovered he had Metastatic Stage IV Melanoma. Over the two years following his original diagnosis, the cancer had taken over Stephen’s body without anyone noticing. The outlook was grim, and his prognosis was even worse. Despite an aggressive attempt to save his life, Stephen lost his battle with cancer on November 14, 2017, 106 days after diagnosis. He was surrounded by his loved ones at home.

Before his passing, Stephen had unknowingly planted the seed for what would later become his legacy. During his stay at the hospital, it didn’t take long for him to notice how poorly designed the hospital gowns were for patients receiving infusion treatment. Stephen wanted to make a difference in easing the pain of young patients undergoing cancer treatment. In true Stephen fashion, he started designing a superhero-inspired gown for pediatric cancer patients. This was the start of Miggy’s Gift.

Miggy’s gift visits hospital pediatric care units to deliver gift packages to these patients and their families. Every patient gets a superhero hospital gown, our Mighty Miggy storybook, a plush stuffed animal with a superhero cape, and other items the patient needs. We’ve visited the Miami Cancer Institute, Nicklaus Children’s Hospital, Joe DiMaggio Children’s Hospital, Holtz Children’s Hospital, Baptist Hospital Pediatric Unit and Alex’s Place at Sylvester Cancer Institute. We’ve been able to connect with more than 100 children and their families.

Miggy’s Gift also works to educate and bring awareness to the dangers of sun exposure, the importance of regular skin checks and early detection. We host seminars, distribute educational materials, and advocate within our community. One of our most successful events is our annual Miggy’s Gift Awareness Walk. Since 2019, we’ve brought together local dermatologists from the Miami Center Institute and Nicklaus Pediatric Dermatology and hundreds of friends and family members of Stephen’s to walk a mile together.

Everything we’ve done through with Miggy’s Gift since Stephen’s passing is a direct reflection of him. My son’s compassion and graciousness continues to inspire us, and people who knew him, to care for and give back to the people around us. Together, we’re helping prevent others from being diagnosed with skin cancer.

You can learn more about Miggy’s Gift at www.miggysgift.org.

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Skin Diaries

A Journey of Reclaiming Her Identity

Imagine that you lived for 33 years as one race. Now imagine that your appearance changes so much that your race is not identifiable. This is what happened to me. I lived for 33 years as a dark-skinned African American woman. At age 33, white spots on my hands were diagnosed as Vitiligo. By the time I was 37 years old, I had lost all pigment in my skin due to Vitiligo. I now have white skin all over.

According to Harvard Health Publishing, “Vitiligo consists of white patches of skin that are caused by the loss of melanin, the pigment that is a major contributor to skin. Melanin is produced by special cells called melanocytes, which are destroyed in people who have vitiligo. The cause of vitiligo is not known but evidence strongly suggests that vitiligo is an autoimmune disorder, in which the body’s immune system mistakenly targets and injures these specific cells.”

I love the beach. Anyone who knows me knows that if I’m on vacation, I’m at the beach. I always reserve an oceanfront room due to the fact that I get sunburnt so easily. Having clothes that have UV protection allows me to spend more time out in the sun in order to get much-needed vitamin D, which is so important for people with vitiligo because we also suffer from low levels.  I have personally had difficulty with vitamin D deficiency.  I am on a constant quest to find aids to combat underlying conditions of vitiligo.  Coolibar’s clothing and hats are medicine for a number of conditions that require extra sun protection.  

I am currently a retired teacher.  I taught students with cognitive and physical disabilities for 20 years. My goal is to share my journey with vitiligo to inspire others like me. Each journey is different but I believe that by sharing, we don’t have to feel alone. I was not prepared for the responses I got about the changes in my skin due to vitiligo. I soon discovered that some attributed my white skin to race.  This started a journey for me to reclaim my identity from within. I had to do the work to understand who I am was as an African American woman.

On this World Vitiligo Day, I am happy to share my journey in celebration. There are as many vitiligo stories as there are people with vitiligo.  Whatever your journey, take a moment on this day to reflect and let your light shine. 

Link to my book on Amazon: Vitiligo Black to White: My Personal Journey (Volume 1)

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Skin Diaries

World-Renowned Golf Instructor Teaches Sun Safety

As a professional golf coach, I am very focused on the health and fitness component of a player’s performance. The game has so many positive health benefits but like anything where you are outside for long periods of time, sun awareness and protection are vitally important.

I was born in England but moved to Southern Africa when I was a young boy, so we grew up playing lots of sports and activities outdoors with lots of sun. Back then in the 60’s and 70’s, skin cancer wasn’t really ever spoken about, and sunscreen may have been applied but mainly to the nose and ears to prevent peeling. Hats weren’t always worn either. We never had the level of knowledge about protecting ourselves as we do today.

I became more acutely aware when my father was diagnosed with Melanoma no doubt as a result of overexposure to the sun. Sadly, he passed away from it and as a result, I have become very conscious and proactive in protecting myself and my family from the negative effects of the sun and going for regular checkups with the dermatologist. Skin cancer is the most common cancer in the United States but not only is skin cancer preventable, it’s highly treatable when detected early.

I was introduced initially to Coolibar through my wife Kelly, who grew up in sunny Arizona, and our dermatologist who recommended I wear Coolibar sun sleeves to protect my arms with me being outside for such long periods. My wife Kelly had been a Coolibar customer for a while and selected some pieces for me. I especially liked the fashionable Erodym shirt with long sleeves and after that was sold. I have been wearing the products for a while now and really enjoy the style, comfort and performance of the products.

Over the years, awareness of sun protection has increased substantially and particularly within the golf fraternity but I think there is still a long way to go. My trademark has always been wearing a straw hat and sunglasses and I never leave home without them, plus SPF lip balm and a high quality SPF sunscreen.

I am really excited to be an ambassador for Coolibar and work with the team on developing new products and raising the awareness for sun protection

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Skin Diaries This is Brave

This is Brave: Annie Carney

Since writing my story, I learned that my dear friend and ‘cancer buddy’ Erika Valdivia lost her cancer battle. I’m sharing my story in honor of her. Her courage, her strength, and her love for everyone she met.  Through all the bumps and missteps of my cancer journey, she was there for me.

I grew up like many Minnesotans, I spent summers outside on the lake at the cabin, and I loved it. At a very young age I learned to love the water, nature, being outdoors, and the sunshine. I’ve carried that with me throughout my life. Even now as an adult the lake is truly my happiest place and our cabin has forever been my favorite place on Earth. 

In October 2013, I made the decision to leave my Minnesota roots and move to California. The one thing I had always promised myself was that I would live near water—or at least live a short drive to the beach. I started in Redondo Beach, moved down to Huntington Beach, and am now in Laguna Niguel. Since I’ve lived so close to the beach for the past seven years, I have spent a lot of time walking, exploring, logging my steps…just enjoying the sunshine and being outside. As you can imagine, I’ve stayed pretty tan as a result. I was never one to lay out, use tanning oils, tin foils, or go to the tanning salons.  I don’t even wear a bikini! But I do love being tan and always have.

One of the reasons why is (I’m sure) all too common…I struggle with mental health issues. I struggle with body dysmorphia issues and always hated how I look when I’m pale. If I saw myself in the mirror and I was pale (with dark brown hair), I would need to fix that ‘flaw’ to feel better about myself. I have spent plenty of time outside, I’ve used a lot of sunless tanning lotions, and I have not always been great at wearing or re-applying sunscreen, all in an effort to keep a little color. Come September 2020, I was working at LifeTime Fitness and noticed a bump on my face.  I didn’t know what it was from, so I called around to different Dermatology offices and got in the next day as a new patient. When I went in, they were incredibly thorough and had a lot of questions about all the moles I had and when my last skin check was. I had been pretty good about going in for skin checks over the years, but 2020 was tough. So many places were closed due to the pandemic. Until I found this bump, I had decided to patiently wait until places opened back up.

During that visit, they found several spots they were concerned about and wanted to take off, specifically three spots. One was on my right buttock (which I swear has never seen the sun), another at my waist right at the pant line (again, I don’t think it’s ever gotten a sunburn), and the other spot was on my right arm. 

The spot on my arm had been there for years and previous dermatologists had been watching it, so I didn’t think anything of it. That was until I received not one, but three phone calls from my new dermatologist following my initial appointment. It became a very different story. I had to go back in two more times for them to cut more off. Then a third time when they said they wanted to do an excision because it was melanoma. 

When I heard the word “melanoma” the world started spinning a little, but I figured all would be fine. I was going to stay calm. 

Fast forward a couple weeks… I did my best to approach my diagnosis as best I could. I got multiple opinions regarding my diagnosis and treatment options and was ultimately referred to an oncologist. They performed the excision on my arm successfully, but the cancer had already spread to my lymph nodes. I had melanoma in the lymph nodes in my groin, armpit, and neck/chin area. They started doing treatments immediately and decided to do T-Vec injections, which is an immunotherapy chemo treatment that gets injected directly into the infected lymph nodes.

Initially, November and December weren’t too awful. Most days I just felt like I had the flu–-nausea, chills, fatigue, exhaustion, and pain. I didn’t like it, but I told myself it was nothing I couldn’t handle. Through it all I kept working full-time, partially because of my mental health.  The thought of going through all of this and NOT having my colleagues and friends around me sounded like an absolute nightmare. While people disagreed with my choice, I had to make the best decision for me. No one but me knows how deep some of those battles are, and I had to trust myself. 

One of my unforeseen complications was a BIG one. Before I ever had cancer, I had Crohn’s Disease—an autoimmune disease. My friend Erika was with me to celebrate when we finally found a medication to manage the disease. That medicine, however, had a known side effect…increase the risk of skin cancer. Well, it worked!

With the combo of Crohn’s and Melanoma, my body has been put through a lot. I have a lot of days where my mental struggle is rough. I question a lot and I am adjusting to being pale all the time. I’m trying to see myself as beautiful regardless and am working through the physical struggles. The part that has been one of the biggest challenges for me is that I grew up playing sports, competing, and have a real love for being active and working out—and how your body, mind, and spirit feel from it. When my mental health gets the worst of me, I take it out on the gym. However, I have lost a lot of strength and weight and I can’t do what I used to be able to. It feels so defeating.  Now, I have days where I leave the court or the gym and feel far worse than I started. I just cry because I can’t do what I need to do to get the frustrations out. Instead, I’m just reminded of where I am at and what I am dealing with. I go through a mental, physical and emotional cycle…then grace comes in. 

Giving yourself (myself) grace is just as important as giving others grace. Cry when you need to, take a nap, and don’t beat yourself up for any part of this. Your body is fighting a hard battle.  You need to allow yourself space and grace when you are going through this. It isn’t going to be easy, it isn’t going to be pretty, but you are absolutely stronger than you think. 

The team from Coolibar really helped me with this. They helped me feel less trapped by my diagnosis. I was able to get back outside and live in good faith that I was protected, rather than dealing with the constant fear of being in the sun. Their mission was exactly what I needed. They not only make clothing that keeps us safe, living and finding joy…their outreach and support reminds us that we are strong, we are BRAVE and we are fighters. They share their warrior stories so that we know that we’re not alone even though the statistics are scary. For that I’m grateful.

I have not been good at sharing my story, so when they asked, I was hesitant. When I was first diagnosed, my parents and a best friend were much better at it. It was because of them that I was introduced to Coolibar.

One of the reasons it was hard was because, as I was trying to process all of this, I kept hearing three things from people…

  1. You did this to yourself.  You just loved being tan and outside too much.
  2. You will never be able to be outside much again, and you must be covered from head to toe.
  3. Oh, this is very treatable, it is no big deal.  They can just cut it off.

None of those three things should ever be muttered to someone in my position. The amount of guilt, shame, embarrassment, sadness and disappointment in myself that those words brought to me was indescribable. That is why I stuck to what I know best “don’t talk about it, just deal with it”.  When I started sharing my story with Coolibar they helped me overcome these negative thoughts. I know they’ve done the same for many others working through unjustified guilt.

Being vulnerable, letting others in, and sharing your story can help yourself, and someone else. That is why I did this. Skin cancer is hard, no matter how strong you are, and it can also make you feel like you are the least strong person on the planet! Sharing can also bring support, love, and care into your life—which we need when we are going through something challenging. Every single little piece of kindness means so much to me right now. Every kind word, every encouraging word, and every prayer… means everything because I am so grateful for it. It carries more weight than it ever has. You learn what really matters, what is important, and what deserves your attention versus what doesn’t matter. 

I’ve had to block out some shame and negativity to get through my diagnosis and treatment. But that’s okay. You can say ‘NO!’ to people, places, ideas, thoughts…that aren’t helpful or bring you down. No is a complete sentence. 

In an effort to support you, the person reading my story, in whatever you’re going through…

Know you are strong. You are loved. You are worthy. You have prayers and support. If you ever need anything, reach out for help. There is always someone. I’m here for starters! If I don’t have all the answers, I can offer an ear to listen and a shoulder to cry on. After losing my ‘cancer buddy’, my will to fight this is stronger than ever before.  If you are on this journey, in this fight, and know others who have lost their battle… do it for them.

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Skin Diaries This is Brave

This is Brave: Dee Conway

Growing up in Phoenix, Arizona, my family spent most of our days in the water. The sun here is always shining brightly (after all it’s known as Valley of the Sun) and summers are long and hot. Swimming has always been a wonderful way to get out of the house and cool off. When I was young, my family would escape the city heat by going on camping trips or hiking the cool forests in Northern Arizona. We loved looking for caves and playing in mountain streams. During my teenage years I started driving to the lake with friends. I continued to be carefree and have fun in the sun!

Skin cancer touched my life for the first time in August 2002, when I was 24. My husband and I were expecting our first child and had noticed three moles grow substantially during my pregnancy. Luckily, I decided to pay my first visit to the dermatologist. The moles were benign. Good news! Even better, I started scheduling annual skin checks and giving myself monthly self-exams.

Since that initial check, I’ve had more moles removed than I can count. My dermatologist had started calling me ‘Holy Moley’ thanks to all my biopsy’s. At 29, a mole was removed from my back that came back as a ‘severe dysplastic nevus’ which meant the mole was very close to becoming cancer. At 29 years old, I was close to getting cancer!! I was shocked, but even after this, I still was not protecting my skin enough. I increased my use of sunscreen, but I should have been more diligent.

Fast forward to April 10, 2018, my 34-year-old sister Rose was diagnosed with melanoma. A tan mole that was smaller than a pencil eraser on the back of her neck was catching on her shirts and had started to itch. After further tests, they found melanoma in her lymph nodes and Rose decided to go through with a neck dissection where 40 lymph nodes would be removed for even more testing. 2018 quickly turned into the year we spent at the hospital…

Memorial Day weekend 2018, my vibrant, active husband was experiencing extreme fatigue, unlike anything I had ever seen. He had been recently diagnosed with pneumonia, but the antibiotics weren’t working. The following week, he ended up in the ICU with a 104-degree fever and a mysterious illness that was causing his oxygen levels to drop. Then a little over a week later, June 7, 2018, my husband was put on a ventilator as Rose went in for her neck dissection. Results confirmed she had Stage IIIB, Nodular Melanoma BRAF+.

While Rose recovered from her surgery, my husband’s condition worsened. He needed to be transferred via helicopter to another hospital to be put on Extracorporeal Membrane Oxygenation ECMO. My husband was experiencing complete pulmonary failure. While Rose healed, she spent every day at the hospital with me. She was in the lobby when I arrived every morning. She was a microbiologist, so she researched her condition and assured me that treatments were advancing, and she’d be okay, and helped me focus on my husband and navigate and understand his treatments. After 39 days in the hospital, my husband finally recovered. The mysterious illness was Valley Fever, a fungal infection caused by coccidiosis organisms found in the Southwest of the United States. Shortly thereafter, Rose started immunotherapy (OPDIVO), which she called ‘a living hell’. By August, Rose had pain in her hip to the point where she couldn’t run or exercise. In mid-September, her treatments were on hold due to extremely elevated liver enzymes. By late September, she was admitted to the hospital due to extreme abdomen pain and bloating. It was then that an ultrasound discovered a spot on her liver and a biopsy confirmed more melanoma. Her scans showed widespread disease She had a rare condition known as Hyperprogressive Disease (HPD) which causes the cancer to grow aggressively instead of shrink. My heart was broken and I was in shock. Our last hope was BRAF & MEK inhibitors. Unfortunately, by the time they arrived, Rose was entering liver failure and visible decline. Six months from Rose’s initial melanoma diagnosis, she passed away on October 9, 2018 at the age of 35.

After losing Rose, my family started annual skin checks. An older brother of mine found out three months after she passed that he had melanoma in situ (meaning on the top layer of the skin) and basal cell carcinoma. In 2019, I had two atypical melanocytic proliferations on my face. We were both lucky to have detected these spots early! During my most recent check one of my biopsies came back as squamous cell carcinoma. My first skin cancer diagnosis…DEEP BREATH! We ultimately decided chemo cream would be best to treat the area and I completed the treatment at the end of January 2021.

After everything we went through as a family, Rose has always held a precious place in my heart and life. I’ve managed my grief by honoring Rose by spreading awareness of skin cancer and educating people on the need for protection and prevention. I encourage everyone to…

  1. Wear sunscreen daily and reapply often.
  2. Use UPF 50+ apparel! It has become my go-to for all outdoor activities.
  3. Wear a hat! They’re a great accessory and protection for your scalp.
  4. Perform monthly self-checks and if you see something, get it checked!
  5. Don’t forget to schedule your annual skin checks with a board-certified Dermatologist.

I do not believe in fearing the sun but being smarter than the sun. This is a preventable cancer, and I don’t want anyone else to experience the pain everyone who loved Rose still feels. Rose was so much more than a young woman who died of melanoma. Everyone that loved her will continue to carry her with us and do our part in sharing her story. My sister and her story save lives.

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